Informed choice for newborn blood spot screening in the United Kingdom: a survey of parental perceptions.

Abstract:

OBJECTIVE:In the United Kingdom, newborn blood spot screening proceeds on the basis of consent based on an informed choice. However, little is known about parent experiences of this process. This study was intended to explore parents' understanding of newborn screening and their experience of the consent process using a structured survey. METHODS:A mail survey exploring key components of consent was sent to parents whose children had been screened in the year before the study. A descriptive analysis of responses together with logistic regression was performed to identify variables that predicted parental likelihood to agree that they had made an informed choice to screening. RESULTS:Most parents indicated they understood why the heel prick was done, but only a third understood how conditions would be dealt with if found. Almost a third of parents reported that they did not feel they had a choice to decline screening, yet >70% felt they had made an informed choice. Logistic regression indicated previous children, understanding why the heel prick was done, having time to make a decision, and feeling they had a choice were significant predictors of feeling an informed choice had been made. CONCLUSIONS:The findings support previous studies that screening may be seen as a fait accompli. Analyses indicated that allowing time to make a decision (eg, by providing information during pregnancy, emphasizing the decision-making aspect, and clearly articulating the reasons behind screening) may help parents feel that they have made an informed choice.

journal_name

Pediatrics

journal_title

Pediatrics

authors

Nicholls SG,Southern KW

doi

10.1542/peds.2012-1479

subject

Has Abstract

pub_date

2012-12-01 00:00:00

pages

e1527-33

issue

6

eissn

0031-4005

issn

1098-4275

pii

peds.2012-1479

journal_volume

130

pub_type

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